EC TREATMENT CHOICES - TRIALS OR CONVENTIONAL CHEMO - CAN ANYONE ADVISE?
I just hope that someone out there has the time to review the information which follows below and is in a position to offer some guidance. Basically the information below is the treatment regime my brother has followed to reach the stage where he must now choose one of three options for treatment. One of these,IRVALEC,is just at the clinical trial stage, the others, Taxotere and Campto, you may have heard of. Any feedback you can give me would be appreciated. It may also help you to know that through all of this my brother has continued to hold down a steady job and is one of the most positive people on the planet!
CONDITION & TREATMENT SUMMARY
INITIAL DIAGNOSIS
I attended my GP on May 7th 2010 because I was having difficulty in swallowing. I believed it was related to my Hiatus Hernia and my Doctor agreed to refer me to a specialist under my company private health cover to investigate. On 27th May 2010 I had an endoscopy and biopsies at the Nuffield hospital in Glasgow and was advised that I had a swelling in my Oesophagus that looked potentially cancerous. Around 7th June 2010 it was confirmed that the swelling was cancerous. At a later date following a CT scan, a PET scan, another scope with further biopsies, an endoscopic ultrasound, and a fitness test I was advised that I had Advanced Oesophageal Cancer. I was further advised that there was evidence of cancerous activity in two Lymph Nodes ( I don’t know where these nodes are ). Through consultations I was advised that the Cancer was inoperable as it was outside the operable zone and that I would undertake a course of palliative treatment involving Chemotherapy ( EOX ). When questioned on life expectancy my consultant advised that every case was different but that based upon statistics, with palliative treatment, 10 months to 3 years may be a realistic expectation.
FIRST PHASE TREATMENT
Medication. From 7th June 2010 my treatment has been managed by the NHS in Glasgow. On 19th July 2010 I started a course of Chemotherapy at the Beatson Hospital in Glasgow. I had six cycles lasting three weeks each. On the first day of each cycle I attended the Beatson as an out patient to receive 100mg of Epirubicin and 260mg of Oxaliplatin intravenously. I also took 2400mg per day of Capecitabine orally over each three week cycle. On the last three cycles the Epirubicin was reduced to 80mg ( Two cycles ) and then 50mg due to side effects discussed below. Over the period of Chemo my ability to swallow was reduced and after the sixth cycle of Chemo I was given combination Chemo / Radiotherapy to try to improve my swallowing. The Chemo was Cisplatin administered intravenously over night in hospital followed by 2400mg per day of Capecitabine orally at home over three weeks. The Radiotherapy was administered over ten days as a out patient at the Beatson starting on the day after the Cispaltin drip. The Radiotherapy finished on 17th Jan 2011 and I took the last dose of Capecitabin on 25th Jan 2011. I was also taking anti sickness drugs and steroids throughout my Chemotherapy
SIDE EFFECTS AND PROGRESS
Through the Chemo my white blood cell count fell on four occasions and the next sessions were put back by one week to allow the blood count to increase. The Epirubicin was also reduced in the last three cycles because of the falling blood count. My swallowing improved after around one week of Chemo and then got progressively worse over the next five weeks. By that time I could not eat anything more difficult than soups. After two cycles a scope and a scan actioned as a result of my swallowing difficulties showed that the Tumour and the cancer spots in the Lymph Nodes had reduced in size 30%. It was decided that there would be no intervention to improve swallowing at this time and the consultant advised that the number of Chemo cycles may be increased to eight. I completed the six Chemo cycles and other than the complications discussed above I only had minor side effects like tingling of the hands and feet at the beginning of each three week cycle, some itching of the skin, and sleeping an extra hour per day. I was fortunate not to have any disabling side effects. At the end of my six Chemo cycles a CT Scan showed that the size of the Tumour and the two cancer hot spots in the Lymph Nodes had not changed since the last Scan four Chemo cycles before. The consultant decided that there was no benefit in going to eight Chemo cycles. Also at this time the Consultant decided that Radiotherapy would be the most appropriate palliative approach to improve my swallowing. A week after the Radiotherapy finished I lost my appetite for a week or so and my swallowing got worse. This lasted for around one week during which my swallowing improved by comparison to pre radiotherapy status and my appetite returned. In general throughout the first phase of treatment until around the end of Feb 2011 I felt and looked well. My activity levels were down a little but I kept my weight constant, I never lost my hair, and have never felt sick. I also continued to work every weekday and lead a full and normal life. The only new symptom that remained with me at this time was a tingling sensation and numbness at the very tips of my fingers and in my feet.
ONGOING TREATMENT PLAN
: Initial plans. At the end of the first phase of treatment ( Jan / Feb 2011 ) my consultant advised that going forward for say the next nine months my condition should be managed based upon symptoms. He explained that the Tumour and the Cancer would continue to grow and that there would be no point measuring this and telling me about that growth rate as there is no realistic way to deal with it now that Standard Chemotherapy is not an option for say the next nine months. He further advised that I should contact him or my GP when I notice any changes in my health and if this occurs during the next nine months he will deal with the symptoms. After nine months or so there may be an option to go back onto Standard Chemotherapy. Over the nine month period my consultant planned to meet with me possibly every two months.
SYMPTOMS
Towards the end of Feb 2011 I started to get sharp pains below my collar bone when coughing or forcing toilet needs. I talked with my GP and met with my consultant and a CT scan was arranged. Whilst waiting on the scan I started to get pains in and around my stomach and I also completely lost my appetite. I spoke with my GP and we agreed to use a mild antispasmodic and laxative to try to relieve the pains. This did not have any success. The CT on 15th Mar 2011 showed that the cancer had progresses aggressively. The scan showed significant evidence of cancer around my stomach, my liver, my chest and along my food track. My lungs and my bones are still clear of cancer. I have ongoing niggling pains around my stomach, ribs, and lower torso.
CURRENT TREATMENT OPTIONS
My consultant has offered me the opportunity to participate in clinical trial of “ Irvalec “ being conducted at the Beatson hospital in Glasgow. If I choose not to take this option the consultant has suggested that he could apply for approval to NHS Glasgow to treat me with “ Taxotere “ or “ Campto “. The consultant has advised that there are some signs of success from the previous trial of “ Irvalec “ and that the other two options have previously had limited success and would also require approval for use. In addition to the options above under the care of NHS Glasgow I have private medical insurance that could fund my ongoing treatment.
CURRENT TREATMENT GOALS
My current treatment goals. My goal is to have a measured, dynamic, pro active future medical treatment plan that targets the best possible balance between quantity and quality of life that is available to me. Re the balance between quantity and quality of life, I currently have a very good quality of life that includes work, family, short holidays, etc. I am fortunate that if required I could stop work or work part time and reduce other activities to undergo treatments or even to live a longer less active life.
MY TREATMENT QUANDARY
In order to consider my current treatment options and to select the option that best matches my current treatment goals I need to quickly find some measure of the success potential for those options available through NHS Glasgow. I also need to find out what other options may be available to me from the UK private health care system and have some measure of the potential success of these. To this end I am conducting some research via the internet and would welcome comments from others who feel they have past experience that could help me with this.
Comments
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Welcomeunknown said:This comment has been removed by the Moderator
Hello and welcome to our ec discussion board family. I was a caregiver for my dad. He passed in March 2010 from ec with mets to the liver. I agree with Sherri, the quality of your life is what is most important. You say that as of right now you have a good quality of life. Whose to say what this trial will do to your quality of life? You will not know until you try it. See how it goes, if you get bad side effects, and your quality of life declines, stop it. I just know from my experience with my dad, if I knew then what I know now......I would never have suggested he have more chemo once it went to his liver. He suffered tremendously the last 3 mos. of his life. Everyone is different. We will be here for you. Thinking and praying for you.
Tina in Va0 -
EC TREATMENT OPTIONSunknown said:This comment has been removed by the Moderator
Hi Sherri,
Thank you so much for responding to my posting so quickly and for passing on the details of your husbands treatment and medication. It's great to see that he had 22 good months but I would like to express my condolences. Thank you also for continuing to support the network and other like myself considering how you must be feeling yourself right now. I passed on all your responses to my brother this morning. He has a meeting this afternoon with his consultant and thanks to you all he now has a mound of quality information which he intends to filter through beforehand so that he can be prepared to discuss key options. Regarding quality of life info for the options offered we have read up on the side effects for each of these but might now be asking for the options to be extended to consider others but we're at the "work in progress" stage on this.
Thanks again for the moment- we would possibly like to ask you some more questions after today if you are all right with this.
Kind regards
Ecourtney0 -
EC TREATMENT OPTIONSTina Blondek said:Welcome
Hello and welcome to our ec discussion board family. I was a caregiver for my dad. He passed in March 2010 from ec with mets to the liver. I agree with Sherri, the quality of your life is what is most important. You say that as of right now you have a good quality of life. Whose to say what this trial will do to your quality of life? You will not know until you try it. See how it goes, if you get bad side effects, and your quality of life declines, stop it. I just know from my experience with my dad, if I knew then what I know now......I would never have suggested he have more chemo once it went to his liver. He suffered tremendously the last 3 mos. of his life. Everyone is different. We will be here for you. Thinking and praying for you.
Tina in Va
Hi Tina,
Thank you for the warm welcome to the community and sorry to hear about your dad - I'm sure that his memories will still be as strong at his first anniversary. on the question you have asked, consultants have given us a document to read up on the drugs in question but these are basic fact sheets which suggest there is not much to choose between the 3 in terms of side effects. In any case the feedback you have all given has been tremendous and my brother is now considering this with a view to putting together a range of key questions for a meeting he has lined up with his consultant this afternoon. I'm sure following this we might well be asking for some more input and would hope you would be okay with this
Kind regards
Ecourtney0 -
Hiecourtney said:EC TREATMENT OPTIONS
Hi Sherri,
Thank you so much for responding to my posting so quickly and for passing on the details of your husbands treatment and medication. It's great to see that he had 22 good months but I would like to express my condolences. Thank you also for continuing to support the network and other like myself considering how you must be feeling yourself right now. I passed on all your responses to my brother this morning. He has a meeting this afternoon with his consultant and thanks to you all he now has a mound of quality information which he intends to filter through beforehand so that he can be prepared to discuss key options. Regarding quality of life info for the options offered we have read up on the side effects for each of these but might now be asking for the options to be extended to consider others but we're at the "work in progress" stage on this.
Thanks again for the moment- we would possibly like to ask you some more questions after today if you are all right with this.
Kind regards
Ecourtney
Hi
I could not even begin to offer any advice to your brother compared to the people who have already responded, but Just wanted to say as a fellow Brit, having lived "across the pond" for 3 years now, these people know there stuff and will help with the major and minor, the good, the bad and the ugly.
We are originally from London, but have the BEST of friends in Scotland and coincidently my friend (from Dundee) is staying with me this week to help with the kids as they are on their spring break (half term). My husband is only 44 and has stage 3 with extensive spread to lymph nodes.
Without getting into a big debate, having experienced both the NHS and the US medical system the only advice I would give is, read, research (which you have done and already know you found a great site) and challenge. It is not something we Brits are necessarily brought up with in the NHS but your brother IS entitled to a second opinion and no matter which side of the pond your on "information is power". I am a believer that the NASH is a great establishment in many ways, but we both know that lack of funding is an issue your brother cannot afford.
We wish your brother the very best and once again, the people on this site will help in every possible way and that is in addition to having YOU on his team.
Take care
Julie and Paul0 -
EC TREATMENT OPTIONSjpturn4 said:Hi
Hi
I could not even begin to offer any advice to your brother compared to the people who have already responded, but Just wanted to say as a fellow Brit, having lived "across the pond" for 3 years now, these people know there stuff and will help with the major and minor, the good, the bad and the ugly.
We are originally from London, but have the BEST of friends in Scotland and coincidently my friend (from Dundee) is staying with me this week to help with the kids as they are on their spring break (half term). My husband is only 44 and has stage 3 with extensive spread to lymph nodes.
Without getting into a big debate, having experienced both the NHS and the US medical system the only advice I would give is, read, research (which you have done and already know you found a great site) and challenge. It is not something we Brits are necessarily brought up with in the NHS but your brother IS entitled to a second opinion and no matter which side of the pond your on "information is power". I am a believer that the NASH is a great establishment in many ways, but we both know that lack of funding is an issue your brother cannot afford.
We wish your brother the very best and once again, the people on this site will help in every possible way and that is in addition to having YOU on his team.
Take care
Julie and Paul
Hi Julie and Paul, thanks for taking the time to comment. Hope your friend is a great comfort to you. We live in Glasgow but I know Dundee well and was recently through at the Port there. I also have family in London Sorry to hear that your husband has stage 3 at such a young age.Like you I could not possibly offer advice but can say that I have been overwhelmed with the advice and support that I have had, some of which has been offered via e-mails.Also like you I would not want to get into a long debate about NHS. Fortunately my brother has medical insurance and this has now allowed him to get agreement on care that the NHS were holding back on.
He has decided against participating in trials and has also decided not to take the alternate chemo which he MIGHT have got ( this would have to have been applied for with no guarantee of approval).
One thing we are mad about is lack of HER 2 Testing in our area. Our consultant justified this by saying that it might only be found in 17% of the people tested!!!!!
My brother has changed to a private consultant and actually started a course of Taxotere plus Crisplatin yesterday. He is also awaiting a HER 2 Test and if this proves positive may get Herceptin to go along with the other meds. He is also on steroids and additionally s will get an injection after chemo to help keep the white blood cells in check thereby allowing him to keep on the 3 weekly chemo programme.
This is a whole lot more positive than when I posted my original note and I will say again that this site, William, Sherri and Tina have gone the extra mile for us. We will no doubt continue to ask for support on our journey and I wish Paul, the children and you all the best on your own journey. Thanks again for your comments
Kind regards
Ecourtney0 -
EC TREATMENT OPTIONSjpturn4 said:Hi
Hi
I could not even begin to offer any advice to your brother compared to the people who have already responded, but Just wanted to say as a fellow Brit, having lived "across the pond" for 3 years now, these people know there stuff and will help with the major and minor, the good, the bad and the ugly.
We are originally from London, but have the BEST of friends in Scotland and coincidently my friend (from Dundee) is staying with me this week to help with the kids as they are on their spring break (half term). My husband is only 44 and has stage 3 with extensive spread to lymph nodes.
Without getting into a big debate, having experienced both the NHS and the US medical system the only advice I would give is, read, research (which you have done and already know you found a great site) and challenge. It is not something we Brits are necessarily brought up with in the NHS but your brother IS entitled to a second opinion and no matter which side of the pond your on "information is power". I am a believer that the NASH is a great establishment in many ways, but we both know that lack of funding is an issue your brother cannot afford.
We wish your brother the very best and once again, the people on this site will help in every possible way and that is in addition to having YOU on his team.
Take care
Julie and Paul
Hi Julie and Paul, thanks for taking the time to comment. Hope your friend is a great comfort to you. We live in Glasgow but I know Dundee well and was recently through at the Port there. I also have family in London Sorry to hear that your husband has stage 3 at such a young age.Like you I could not possibly offer advice but can say that I have been overwhelmed with the advice and support that I have had, some of which has been offered via e-mails.Also like you I would not want to get into a long debate about NHS. Fortunately my brother has medical insurance and this has now allowed him to get agreement on care that the NHS were holding back on.
He has decided against participating in trials and has also decided not to take the alternate chemo which he MIGHT have got ( this would have to have been applied for with no guarantee of approval).
One thing we are mad about is lack of HER 2 Testing in our area. Our consultant justified this by saying that it might only be found in 17% of the people tested!!!!!
My brother has changed to a private consultant and actually started a course of Taxotere plus Crisplatin yesterday. He is also awaiting a HER 2 Test and if this proves positive may get Herceptin to go along with the other meds. He is also on steroids and additionally s will get an injection after chemo to help keep the white blood cells in check thereby allowing him to keep on the 3 weekly chemo programme.
This is a whole lot more positive than when I posted my original note and I will say again that this site, William, Sherri and Tina have gone the extra mile for us. We will no doubt continue to ask for support on our journey and I wish Paul, the children and you all the best on your own journey. Thanks again for your comments
Kind regards
Ecourtney0 -
EC TREATMENT OPTIONSecourtney said:EC TREATMENT OPTIONS
Hi Julie and Paul, thanks for taking the time to comment. Hope your friend is a great comfort to you. We live in Glasgow but I know Dundee well and was recently through at the Port there. I also have family in London Sorry to hear that your husband has stage 3 at such a young age.Like you I could not possibly offer advice but can say that I have been overwhelmed with the advice and support that I have had, some of which has been offered via e-mails.Also like you I would not want to get into a long debate about NHS. Fortunately my brother has medical insurance and this has now allowed him to get agreement on care that the NHS were holding back on.
He has decided against participating in trials and has also decided not to take the alternate chemo which he MIGHT have got ( this would have to have been applied for with no guarantee of approval).
One thing we are mad about is lack of HER 2 Testing in our area. Our consultant justified this by saying that it might only be found in 17% of the people tested!!!!!
My brother has changed to a private consultant and actually started a course of Taxotere plus Crisplatin yesterday. He is also awaiting a HER 2 Test and if this proves positive may get Herceptin to go along with the other meds. He is also on steroids and additionally s will get an injection after chemo to help keep the white blood cells in check thereby allowing him to keep on the 3 weekly chemo programme.
This is a whole lot more positive than when I posted my original note and I will say again that this site, William, Sherri and Tina have gone the extra mile for us. We will no doubt continue to ask for support on our journey and I wish Paul, the children and you all the best on your own journey. Thanks again for your comments
Kind regards
Ecourtney
Hi everyone I see that I last posted a note on April 1. I'm not sure about the USA but in the UK that was "April Fools Day" and is traditionally a day when people play pranks or tricks on each other to try to catch each other out. This somehow seems ironic considering the "tricks" that life plays on us all.
I'm writing to give you an update on my brother and also to ask for your advice on the wisdom of his new treatment plan.He is stage IV and he restarted chemo on 31st March. Anyone who has followed my previous posts may recall that we had some really great advice from you guys when, at the end of his last treatment programme**, he was offered the opportunity to take part in a trial. He refused the trial,changed to a new consultant and started a course of Taxotere plus Crisplatin around 3 weeks ago.He is also on steroids and additionally will get an injection after chemo to help keep the white blood cells in check thereby allowing him to keep on his new 3 weekly chemo programme. He has also just had a "positive" result back from a HER 2 test and when he next gets treatment on Thursday (all going well)he will get Herceptin (along with the Taxotere and Crisplatin)He has not responded well to the Taxotere and Crisplatin. He has lost a lot of weight, has lost his appetite and finds that when he tries to eat, he vomits up what he has just eaten. His calorie intake is in the hundreds per day. He has severe stomach pain and is always cold. Mentally he is pretty low but tries to mask this. He has morphine he can take if needed but he refuses to take this as he is still trying to get to work for a few hours each day ( he has to be given a lift there and back) and wants to keep in control of his mind, if not his body. The question I would welcome your thoughts on is the one that many of you have unfortunately had to confront. I have followed Callaloo's thread posted on 4th April which is very convincing with regard to settling for a compromise approach to treatment rather than the alternative of the "big cannons" and the feedback to this has been excellent. I'm not really sure what we would call "big cannons" - does Taxotere plus Crisplatin plus Herceptin every three week fall under that category?
I would be interested in any thoughts you have on this. My thanks again and god bless to you all
** previous treatment plan was from 19th July 2010, six cycles lasting three weeks each. On the first day of each cycle, attended the hospital as an out patient to receive 100mg of Epirubicin and 260mg of Oxaliplatin intravenously. Also took 2400mg per day of Capecitabine orally over each three week cycle. On the last three cycles the Epirubicin was reduced to 80mg ( Two cycles ) and then 50mg due to side effects discussed below. Over the period of Chemo, ability to swallow was reduced and after the sixth cycle of Chemo,was given combination Chemo / Radiotherapy to try to improve swallowing. The Chemo was Cisplatin administered intravenously over night in hospital followed by 2400mg per day of Capecitabine orally at home over three weeks. The Radiotherapy was administered over ten days as an out patient starting on the day after the Cispaltin drip. The Radiotherapy finished on 17th Jan 2011 and the last dose of Capecitabin was on 25th Jan 2011. Also took anti sickness drugs and steroids throughout Chemotherapy treatment programme.
Kind regards
Ecourtney0
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